RC Vacancy: Kent

We are currently recruiting a volunteer to cover our Regional Coordinator role in the Kent area.

Our Regional Coordinators are our point of contact for new enquiries via email and telephone, provide support to the local Support Groups in the area, and represent FMA UK at events among other tasks.  

General duties of the Regional Coordinator include

• Keep up to date with FMA UK news from the FMA UK Trustees, office, website & social media
• Cascade this news and any other information to groups within the region by e-mail or snail mail.
• Keep in touch with groups in the region by e-mail, telephone, meetings or newsletter.
• Help to resolve local group difficulties, asking the advice of a Trustee if necessary.
• Represent the views of groups and helplines at meetings with the Trustees and report back information gained.
• Try to organise a regional meeting annually if feasible.
• Direct new enquirers to their local group or helpline.
• Answer regional e-mails generated from FMA UK website www.fmauk.org
• Represent the region when invited to specific meetings or exhibitions.
• Provide support for people who wish to set up a new local helpline or support group.
• When invited visit local support groups.
• Uphold the FMA UK confidentiality policy at all times, if in doubt make contact with the RC’s Liaison who will seek clarification from the Trustees if necessary.
• Attend meetings with trustees and other regional coordinators online via Skype and in person at annual Trustees/Regional Coordinator meeting
• Provide a monthly report for Skype meetings
• Comply with the Regional Coordinators expectations document.

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Foggy's: Celebrating 10 years as a support group!

I (Deb Cooke) suffered with a number of symptoms for many years, and believed that my medical records had me written up as a Hypochondriac.  My symptoms would vary from day to day.  One day I’d have pain in my right leg for example, and the next day would be my left arm, and ALWAYS my neck hurt.

I finally found a doctor who diagnosed Fibromyalgia.  When I read the symptoms for Fibromyalgia, I cried.  Here I was written down, and I wasn’t alone.

However, June 2010, I contacted FMA UK to find the nearest support group and was told the nearest was in Calne.  I was actually more interested in finding support and information for my then partner, as he found Fibromyalgia harder to live with than I did.  I was encouraged and assisted by FMA UK to start the group and Foggys was born.

16th August 2010 ~ I sat nervously, in the small hall of Liden Community Centre, Swindon, hoping someone will turn up to Foggys 1st ever meeting!  I can still remember myself saying to my then partner, “I hope people turn up”.  An hour later, nerves gone, as 50ish Fibromyalgia sufferers and loved ones turn up and Foggys was officially born.  At one point we thought we'd be out of the door, as we had to keep moving to make room.  Sounds scary? That amount of people. No, it was brilliant.  Relaxed atmosphere, few tears, lots of laughs.

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FMA UK Volunteer Vacancy - Berkshire & Buckinghamshire

We are currently recruiting a volunteer to cover our Regional Coordinator role in the Berkshire & Buckinghamshire area.

Our Regional Coordinators are our point of contact for new enquiries via email and telephone, provide support to the local Support Groups in the area, and represent FMA UK at events among other tasks.

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Billy Ray Mansell: Exercising whilst living with fibromyalgia

Billy Ray Mansell answers questions below about how he exercises whilst living with fibromyalgia. Billy supports the We Are Undefeatable campaign which encourages activity and exercise in those who are living with a health condition and has provided us with an informative insight into his experience of this. 

How can fibromyalgia make you feel, and what barriers would this bring to exercising? 

With my fibromyalgia, I can’t ever seem to escape the physical pain and the muscle tension I have all over my body,  the random aches and pains, and the fatigue on a bad day can be tough to manage. 

Consequences of this can lead to:

- Forced bed rest. 

- Sometimes I cannot exercise how I would prefer or at all

I may have to strip this back down to my roots like some simple stretching, some short walks or low impact activities (activities with less chance of additional injury but what will still have a positive impact with me moving more).

These are just some of the physical barriers, which again are closely linked with the mental health barriers, such as when I ask myself, can I do that?, my body won’t like that?, this will make me worse?, all questions I have asked so many times but the biggest one for me is, not even necessarily the thoughts of doing whatever activity it may be, but the aftermath of doing some activities don’t necessarily impact me straight away, they hit me hard the following day or the day after that. 

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Volunteer Week: Jenny's story

Hi All, my name is Jenny Timms, I am a volunteer for FMA UK, as a Regional Co-Ordinator for the Midlands area.

I have followed FMA UK for many years as I was diagnosed with Fibromyalgia in 2000.

Then recently I came across an advert for my role, on the FMA UK website. I then applied and was given an interview, which I was successful in and was then offered the position.

During my time as Regional Co-Ordinator I have been given several opportunities.

One being given training and further learning about the benefits system, which I take a great interest in as I know how our condition can greatly affect our incomes and therefore our life!

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Janet Horton: Why I volunteer for FMA UK

My role in FMA UK is as a trustee and my specific role is Benefits Adviser, I also respond to all the emails that come in on the This email address is being protected from spambots. You need JavaScript enabled to view it. emails. I help in any other way also, as needed.

I became involved with FMA UK - then Fibromyagia Association UK in November 1993 when I got my official diagnosis of Fibromyalgia, I had had it 4 years by then. I immediately offered to do benefits advice as I had been volunteering for Citizens Advice since 1990. The offer was accepted and I have been the Benefits Adviser ever since. I was not a trustee at the time but became one when Bob Stewart took over FMA UK in 1997. I took on the role of responding to emails in the early 2000's.

Apart from being available on the Benefits Helpline every Monday, Wednesday and Friday up until 2000 and since then Monday and Friday, I have attended all the conferences that FMA UK have arranged, travelled several times to London for meetings with various bodies of Government including the Chief Medical Officer of the DWP back in the early 2000's.

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